Elder guardianship: "For two and a half years, I had no rights"

Willie Berchau, 100, is living on his own in a senior community in St. Petersburg, Florida, after being made a ward of the state and being put in a lockdown unit at a nursing home. After his friends stood up for him, his rights were restored. (Staff photo / Mike Lang)

Because of Stalin and Hitler, young Willie Berchau was shunted from his native Lithuania to Germany, and from there to England as a German prisoner during World War II. After the war, when the Russians had come back into his life, he fled East Germany in 1951 for the United States.

At the age of 99, because of Florida’s guardianship system, he was taken from his apartment at a St. Petersburg elder community to a hospital for bladder cancer surgery, and transferred from there into a nursing home’s locked ward for dementia patients.

Six months later, thanks to friends from his church and a volunteer long-term care ombudsman who agitated for his release, he returned to The Fountains at Boca Ciega Bay.

It’s not the same apartment where he once lived, and his court-appointed guardian sold a lot of his furniture and possessions after placing him in the lockdown unit. But at 100, he is grateful to be home free.

“For two and a half years, I had no rights,” he says. “We had three or four attorneys, and they are not worth the salt on your bread.”

Berchau is a courtly, sweet-natured man who speaks four languages. His small and wiry frame moves deliberately these days — but his thoughts do not hesitate as he recalls how the struggle for his liberty unfolded.

It started at a painful point in his life; he had just lost his wife after two years of caring for her at home.

“She was wonderful. Oh, I wish she would be back!” he says. “We never used to argue, never. If we had a grievance or something to say, we sat down; she came up with a piece of cake and coffee and we discussed it.”

Weary from his years as a caregiver, Berchau wanted to leave behind the house he had shared with his wife, and move to an apartment at The Fountains. He agreed to sell it for $55,000. Then a real estate broker told him the house was worth more, and she offered to find an attorney who would cancel the sale.

“In the meantime, I sent money to my relatives in Germany,” he says. “When the checks couldn’t be cashed, I knew there was something wrong.”

Calls to the state’s Adult Protective Services division of the Department for Children and Families about an elder’s suspected incapacity are anonymous, and Berchau can never know for sure who reported him to the authorities as an elder with dementia.

Patricia Johnson, a professional guardian in Pinellas County, sold Berchau’s house for $65,000, according to court records. She also took over his bank account, changed his doctors, and had his mail sent to her home.

“She became my guardian on account of the court’s decision,” Berchau says. “I looked at her and she looked at me, and I had a feeling that I wouldn’t be able to get along with her. And that’s what happened, from Day One up to the last moment.”

Johnson disputes this account, saying she and Berchau had a “fantastic relationship” until some of his German relatives learned of his case and got involved. She believes they were after his money, and she continues to maintain that Berchau suffers from dementia. She also points out that the court monitor in Pinellas County never accused her of doing anything wrong in Berchau’s case.

Johnson — who says she charges $70 an hour as a guardian, with “30 to 60 percent” of her caseload pro bono — says news reports critical of the guardianship system are not in elders’ best interests.

“Having worked in the system for 30 years, my biggest problem has been that people get scared off by the very people that are trying to help them,” she says. “These stories create an impression that guardianship is a scary thing, and it doesn’t have to be. I’m only there to manage problems and make life better.”

About a year into his guardianship, Berchau says, he feared that Johnson planned to remove him from his apartment, and he asked staff members at the Fountains to help him. That brought a threatening letter from Johnson to the community’s administrators, in September 2012.

She had successfully petitioned the court to restrict Berchau’s right to choose his own doctor and travel, the letter informed them, and he could not leave the premises “unless the guardianship approves, knows with whom he is going and where. His right to make social decisions has been removed also, therefore, you will need to let me know if people are coming to see him, or trying to take him places. . . . You are not helping Mr. Berchau by keeping him confused and at odds with the guardianship.”

Willie Berchau’s friend Heather Riley, left, gave him rides to services at their Lutheran church. Jane Barr, right, a former volunteer in the Florida Long-Term Care Ombudsman Program, worked to get him released from the lockdown unit at a nursing home. (Staff photo / Mike Lang)

Berchau’s friend Heather Riley, who gave him rides to services at their Lutheran church, says she was shocked when Berchau lost more rights in 2012, instead of having all of them restored.

“We were dumbfounded,” she says of his church friends. When Berchau worried that Johnson would put him in a dementia facility, she adds, “we said, ‘No way.’ But she did! Everything had been quiet for a while; then he goes for surgery, and that’s when she did it.”

Riley, out of the state when it happened in July 2013, says she returned to find Berchau’s phone disconnected. His pastor, David Priebe, found out he had been taken from the hospital to a lockdown ward, and church members visited him there.

“We walked in and we cried,” Riley says. “He had no telephone, TV, radio, nothing to read. They were giving him medicine every night to make him sleep. He was holding it under his tongue and he would spit it out.”

Berchau says his month in the dementia ward was a dark and desperate time.

“I felt lonely,” he says. “I didn’t know what to do. You have no television, no radio, no newspapers.”

His guardian, he adds, “told me, ‘You are going to stay here until death.' ”

Jane Barr, then a volunteer in the Florida Long-Term Care Ombudsman Program, says the federal initiative is empowered to help resolve disputes over elder guardianships — but in this state the program has little clout. Administered by the Florida government but funded by the U.S. Older Americans Act, the ombudsman program acts as a voice on an elder’s behalf in any dispute or complaint that involves a long-term care facility.

When she got involved in Berchau’s case, Barr says, Johnson refused to answer her questions.

“In a case like Willie’s, you have to get the documents,” she explains. She located medical records Berchau had never seen, which helped her build a case that he was not incapacitated.

“But as an ombudsman, I couldn’t do a lot,” she adds. “If I hadn’t had these people who cared about Willie like I did, I couldn’t have done anything.”

Barr and Riley wrote letters and made phone calls on Berchau’s behalf. They bought him a cellphone, and he taught himself to use it. They threw parties in the lockdown ward to cheer him up. They found him a new attorney, and had him examined by a psychiatrist who was independent of the guardianship system.

“The last doctor told me, ‘You don’t belong here.’ He gave me hope,” Berchau said. “And these ladies were working without stoppage. These are the best people I ever met in my life.”

Berchau was moved from the dementia wing to a less restrictive part of the facility, but the legal battle to bring him home seemed to be going nowhere.

“In my estimation, the court is the biggest part of the problem,” Barr says now. “There was another psychologist who tested Willie really extensively, and it was independent. He was 97 at the time and the test only goes to 90, and he tested normal for any 90-year-old. But here’s the catch: The court doesn’t have to listen to anyone who isn’t court-appointed.”

Riley got permission from the guardian to drive Berchau from the facility to their church. It was on one of these outings that she arranged to have him interviewed by Adam Walser, a reporter from ABC Action News in Tampa Bay. Riley and Barr believe the publicity from Walser’s reports was decisive in the court’s decision in December 2013 to restore his rights and set him free.

But Johnson, the guardian, says Berchau owes his liberty to her.

“How he got his rights restored was: If the guardian does not object, then they’re restored,” she says, adding that she withheld her objection on her attorney’s advice.

“I personally felt like with all the attention that was brought to the case, he wouldn’t fall through the cracks,” she says. “His monthly income’s good enough that I felt that he would be OK. That’s why I didn’t go in there and holler and scream like I usually do.”

Johnson also thinks it was wrong for Barr to access court documents that are usually confidential in an attempt to end Berchau’s guardianship.

“The ombudsman was using information she gained through her work as an ombudsman and having the ability to go through his medical records,” Johnson says, which she considers a violation of federal patient privacy laws. “Why would the state of Florida give volunteers the right to go through medical records?”

But Berchau says his 30-month guardianship violated his civil rights, and is evidence that systemic reforms are needed.

“In a free society, those things should never happen,” he says. “Only in Stalin’s or Hitler’s country would you expect that. I don’t know why the government doesn’t step in and do something about it.”